The experience of self and threats to sense of self among relatives caring for people with Alzheimer’s disease

Abstract

This study explored how the relatives of people with Alzheimer’s disease expressed Self 2 and Self 3 according to Harré’s social constructionist theory of selfhood. Having a relative with Alzheimer’s disease affects one’s life. In this study, we concentrated on how close relatives of people with Alzheimer’s disease experienced their sense of self. This study was descriptive and qualitative. Interviews were conducted with 20 relatives of 10 people with Alzheimer’s disease from 2009 to 2011. The data were analysed according to Harré’s social constructionist theory of selfhood including Selves 2 and 3. Participants reported that Alzheimer’s disease challenged their personal attributes, relations and positioning. Understanding how Alzheimer’s disease affects the sense of self among close relatives is important, as this knowledge is pivotal for supporting these relatives who are often informal caregivers in ways that enable a fulfilling and meaningful life.

Keywords

Alzheimer’s disease Harré’s social constructionist theory interview self

Introduction

In Norway, approximately 65,000 people have cognitive impairment, and 60% of these live in their homes. Approximately 350,000 Scandinavians have a dementia-related disease and these numbers are expected to increase (SBU, 2008). More than half of the people with dementia-related disease live at home (Norges offentlige utredninger (NOU), 2012), and the lives of their close family members are deeply affected (Fjelltun, Henriksen, Norberg, Gilje, & Normann, 2007).

Background

Alzheimer’s disease (AD) is characterised by cognitive disorders, often involving memory loss and changes in mood, behaviour and character (Brodaty & Donkin, 2009; Brodaty, Thomson, Thompson, & Fine, 2005). People with AD gradually lose their episodic memory and the disease may affect their ability to recognise spouses or children, maintain basic personal hygiene and participate in communication. These changes may affect the relationships and roles of people with AD, as close relatives (e.g. husband/wife, daughter/son, sister/brother) have to take on the role of informal caregiver. These relatives’ relationships with the person with AD may change as a result of AD, including challenges concerning “who am I?” and “who is she/he?” (cf. Clare, 2010). Strong emotions such as anger, grief and despair can occur in relatives of people with AD (Hagen, 2006).

Most studies focus on the burden of care experienced by relatives of a person with AD (SBU, 2008). The psychosocial consequences of caring have been identified, including isolation, feelings of guilt, uncertainty due to a lack of knowledge and loneliness (Gruffydd & Randle, 2006). Holst and Edberg (2011) studied 32 people with dementia who lived at home with family caregivers. The authors found that the amount of informal caregiving that was provided increased dramatically as the dementia progressed. Therefore, the relationships between the patient’s mood and the caregiver’s level of satisfaction and perception of burden became stronger over time. Another study showed that caring for an older family member with dementia exposed the caregiver to stress and negative health consequences (Butcher, Holkup, & Buckwalter, 2001). Informal caregiving can also lead to positive experiences, depending on the emotional state of the person with AD (Andrén & Elmståhl, 2005).

Few studies have focused on how to strengthen family resources to avoid feelings of loneliness and emptiness after the diagnosis (cf. Laakkonen et al. 2008). The experiences of relatives are complex, and depend upon their subjective experiences of burden, subjective health and sense of coherence (Andrén & Elmståhl, 2005).

According to Brodaty et al. (2005), the resources within the family of a person with AD can be important if the family is supported, especially during the first phase of the disease. The period from the AD diagnosis until support from health care services is needed is described as a period of emptiness (Laakkonen et al. 2008). Changes in behaviour induce stress, which negatively affects family members’ health and quality of life (Vellone, Piras, Talucci, & Cohen, 2007), and family conflicts may occur (Peisah & Quadrio, 2006). Few studies have focused on family cohesion (Brodaty et al. 2005). Hence, knowledge about how relatives experience a sense of selfhood when a close relative has AD is important and can be obtained by listening to their stories. Such knowledge is valuable from a public health perspective because it may lead to suitable methods and approaches for AD-affected families to sustain and improve their health and positive relationships within their families.

Theoretical framework

In this study, we use Harré’s (1998) social constructionist theory of selfhood to identify and categorise expressions of selfhood. According to Harré (1998), linguistic expressions are needed to understand selfhood. The term “person” denotes the embodied, material human being, and the term “self” denotes the linguistic expressions that people use to refer to themselves. Harré (1998) refers to the sense of self as a singularity (Self 1) and as the embodied experience of being a unique person. Self 1 refers to the point of view from which we relate to others and ourselves which is associated with the use of first-person words such as “I”, “me” and, “my”. Self 2 is related to a person’s past, present and future attributes, e.g. traits, skills, and beliefs, and the person’s beliefs about these attributes. Self 2 also includes people’s life stories, which are manifested in actions and narratives. Certain Self 2 attributes are relatively constant whereas others are more temporary. In general, personal attributes can be described as facts about ourselves that are linked to personal characteristics and our perceptions of those characteristics. Self 3 comprises the ways people display their Selves 1 and 2 to others, i.e. their social personae and the way others perceive them. Self 3 is created via encounters with other people (Harré 1998, p. 135). With Self 3 people position themselves and are positioned by others (Sabat, Napolitano, & Fath, 2004). People have multiple Self 3 s according to the different situations and people with whom they interact and communicate. Harré’s theory of selfhood (1998) has been used to explore expressions of sense of self in people with AD (Hedman, Hansebo, Ternstedt, Hellström, & Norberg, 2012; Kelly, 2010; Sabat & Gladstone, 2010; Sabat & Harré, 1992; Westius, Kallenberg, & Norberg, 2010). An interpretation of the close relative’s experience observed through the lens of social constructionist theory (Harré, 1998) concerns the degree to which that relation’s informal caregiving supports or diminishes his or her valued mental and physical attributes (Self 2) and valued social personae (e.g. loving spouse, devoted friend), which are jointly constructed by at least two parties (Self 3). Aspects of Selves 2 and 3 can substantially contribute to one’s sense of self-worth (Sabat, 2011). Sabat (2011) described the effects of education, counselling, and psychological support received via email on the self-flourishing of a woman who cared for a husband with dementia. The current study examined how Selves 2 and 3 are affected and expressed in close relatives of people AD who perform and various caregiving tasks.

The study

Aims

This study explored how aspects of self were affected among close relatives to people with AD.

Design

The study is part of a longitudinal, controlled study titled “Identity preserving care of people with Alzheimer’s disease and their families” (the ICP study). The study was conducted in a municipality in Norway and includes 10 people with AD and their families. The participants were randomly assigned to intervention and control groups. This article is based on the initial individual interviews conducted with close relatives who had various caregiving responsibilities.

Sample and participants

Two relatives of each of 10 people with AD from separate families (i.e. 20 total participants) were interviewed (Table 1). The inclusion criteria were that one 65 - to 80-year-old family member had been diagnosed with probable AD without active psychoses, could speak Norwegian and had at least two family members willing to participate in the study. The families had lived with the person with AD from one to six years. The composition of the sample was heterogeneous and included wives, husbands, daughters, sons and in-laws. Variations were found with regard to the degree of caring responsibilities and geographic distance between the residences of the relatives (except the spouses) (Table 1).

Table 1.

Overview of the participants

Family	Next of kin 1	Age	Place of residence	Relative	Age	Place of residence	Patient	Age	Year diagnosed with AD
1	Daughter	38	Same town/village	Daughter	47	Same town/village	Female	79	2009
2	Husband	82	Same house	Daughter	48	Same town/village	Female	80	2009
3	Husband	82	Same house	Son	48	Same town/village	Female	83	2008
4	Wife	58	Same house	Sister-in-law	57	Same town/village	Male	64	2009
5	Wife	57	Same house	Sister-in-law	57	Same town/village	Male	64	2006
6	Wife	63	Same house	Daughter-in-law	47	Same town/village	Male	66	2009
7	Daughter	49	Same house; separate unit	Son	61	Same town/village	Female	84	2005
8	Sister	61	Same town/village	Sister	57	Same town/village	Female	65	2010
9	Daughter	59	Same house; separate unit	Son	63	Same town/village	Female	89	2008
10	Husband	69	Same house	Son	49	Other town/village	Female	67	2010

Data collection

The data collection was conducted from 2009 to 2011. All the participants were individually interviewed twice, at an interval of six months. This article is based on the first interviews. The interviews explored the participants’ experiences of being a close relative of a person with AD. The participants shared their thoughts and experiences openly. The recorded interviews lasted between 50 and 90 minutes and were transcribed verbatim and included notations of non-verbal expressions. The translation of the excerpts presented in the results is based on extensive discussions among the authors to arrive at consensus.

Ethical considerations

People with AD attending a geriatric clinic and their close relatives received a letter that explained the study. Those interested in participating in the study were asked to meet with the researchers for verbal information, and their informed consent was requested at this meeting. The confidentiality of all the participants was guaranteed, and the results are presented anonymously. The participants were assured that their written consent was voluntary and that they could withdraw from the study before data had been analysed without providing a reason. Withdrawal would have no consequences for the person with AD’s follow-up at the geriatric clinic. Three invited families declined to participate, and one person with AD refused to participate in the informational meeting. The Regional Ethics Committee for Medical and Health Research Ethics in Norway approved this study (2009/694). The participants expressed positive feelings with regard to their research contributions.

Data analysis

The transcribed interviews were first divided into content areas according to Harré’s theory of selfhood (Harré, 1998), with Self 1 excluded from the analysis because this construct should not be affected in relatives. Meaning units were identified and labelled “Self 2” or “Self 3” and then condensed according to similarities and differences (cf. Graneheim & Lundman, 2004). Then, abstractions were made to determine the participants’ descriptions of how they revealed that their selfhood had been affected in relation to “Self 2” and “Self 3”. The themes “The preservation and use of attributes with the best of intentions” and “The experience of conflicting emotions” were found concerning “Self 2” and, “The maintenance and development of social selves under new circumstances” and “The experience of a changing relationship” were found concerning “Self 3” (Table 2). To ensure robustness, the co-authors checked and discussed the analysis to reach a consensus.

Table 2.

Themes related to Self 2 and Self 3

Selves	Themes
Self 2	The preservation and use of attributes with the best of intentions; The experience of conflicting emotions
Self 3	The maintenance and development of social selves under new circumstances; The experience of a changing relationship

Results

Expressions of Self 2

The preservation and use of attributes with the best of intentions

The participants commonly strived to make the best out of the situation; they had a profound wish to care for and help the person with AD. The results are presented as statements made by the relatives. One husband’s statement serves as an example of the sense of Self 2. He related that he had previously been a hard worker who, due to his optimistic and positive nature, never considered that a task might be too demanding. However, after his wife was diagnosed with AD, he said, “I see all as insurmountable, and I don’t recognise myself”. Another husband described himself as straightforward and outspoken; now, however, he had to control what he said to his wife because of her AD. Living with a person with AD can be difficult because the consequences of the disease put a strain on the relative’s resources. One husband’s wife was very suspicious, accusatory and could be physically disruptive. His strategy to endure a very demanding everyday life was to use his positive nature and recall good memories to get through hard days and “when she raises her fists against me and accuses me of disrupting her knitting”.

The three wives of men with AD were in their early 60 s and employed. All three described themselves as happy and content with their lives. Their marriages provided them with independence which they appreciated. These three participants shared a concern that they would be more constrained by caregiving in the future, leaving little time for hobbies and travels of their own. One wife described taking over tasks that her husband previously had been responsible for. This role shift satisfied her because she knew she was capable. Furthermore, the shift became a positive experience because “he compliments my handling of the paperwork concerning our house and budget”. The women perceived themselves as strong and able to withstand adversity. However, one wife said that “occasionally my strength wanes”. In describing herself as a strong-headed and outspoken woman, one wife said that she had been obliged to adjust her conduct and control herself around her husband, whom she feared might be hurt by her true nature.

Of the four daughters included in the study, three were employed. The three employed daughters perceived themselves as caring, responsible and loyal daughters, whereas the fourth daughter primarily viewed caregiving for her mother as an onerous duty due to a long-standing history of strain in their relationship. One daughter, who felt a strong sense of responsibility for her mother’s welfare said “I suppress my feelings, but at some point they will surface… and sometimes I cry just from thinking of her”. Another daughter felt that loyalty demanded that she cease her participation in a support group for family caregivers because “… it felt disloyal to talk about my mother and her life with AD to strangers”.

Of the four sons who participated in this study, one lived in a different city than his mother. He spoke of himself as a sober person who coped with the reality of life. He accepted that there was little he could do to contribute and stated that his contact with his mother was equally infrequent as before she was diagnosed with AD. Two other sons also described themselves as sober people who accepted their mothers’ disease without being affected by the situation. However, they wished to support their mothers by visiting and spending time with them out of love and good memories from the past. One of the two sons said that he used humour as an approach when he spent time with his mother, who had substantial verbal problems. As a single, recently retired man, one son readjusted his lifestyle and accommodated his mother’s needs by visiting several times daily and sleeping in her apartment on a regular basis.

Two younger sisters of a woman with AD described themselves as loyal people who valued personal dignity. These attributes were spoken of as resources in their sincerely expressed commitment for their sister, which they understood as reciprocal, stating “I would walk through fire for her”.

Two sisters-in-laws and one daughter-in-law of people with AD participated in this study. Their perceptions of themselves were similar to those of the blood relatives in that they stated that they were realistic by nature. This personality trait helped them cope with everyday life by allowing them to avoid thinking and worrying about the future. Instead, they focused on the present: “I try not to think much about the future. I know he will get worse and that there will be other needs in due time…and I will deal with it then”.

The experience of conflicting emotions

The relatives communicated conflicting emotions in various ways. The most striking comments were made by wives, daughters and sisters. One wife said that “He is becoming more and more dependent on me. He is very fond of me…but it becomes a burden. Also the fact that he loves me…because I can’t respond all the time…occasionally, I am sick and tired of him”. A daughter said that “Sometimes I wish that she would get a physical disease and die before she has to move to a nursing home. I know that when that happens I will be very sad”. A sister expressed her conflicting emotions when she said that “It can’t be so that when I retire, I have to take care of my sister…That feels wrong to me. I don’t know if I am cynical or selfish but…”.

Expressions of Self 3

The three wives included were all employed in jobs they enjoyed; two of them held part time positions due to circumstances unrelated to their husbands having AD. The wife who was employed full time was planning to reduce her working hours to allow more time to care for her husband and another wife had already further reduced her part-time hours because of the strain that her husband’s disease had on her life and her health as her migraine problems had increased. Two husbands said that they were experiencing challenges in maintaining their activities and social relationships and one said “My world is becoming very small. I take odd jobs occasionally and,… I get some contact with others”.

Four of the daughters were employed, and all of them stated that providing the desired level of care for their parent often conflicted with their working obligations and desires to spend time with other family members and friends. One daughter felt that her mother’s disease influenced her work, as she occasionally took leaves of absence to care for her mother. Another daughter stated that she was too tired to maintain a social life. The sisters mentioned their difficulties with continuing family traditions of frequent gatherings, for which they had sole responsibility because their older sister could no longer contribute. This responsibility limited their time and energy for social activities outside the family. The in-laws provided examples of how they considered themselves to be resources in facilitating social encounters that included the person with AD. None of the sons spoke of their social personae and activities as being affected by the situation.

The experience of a changing relationship

When a close family member is diagnosed with AD, there are consequences for all the family members (Addis & Tippett, 2004). In our study, several close relatives provided examples of how their relationships to the family member with AD were changing. For one wife, the changing relationship resulted in her requiring psychological help to maintain and reconstruct her relationship with her husband. A daughter who struggled with her feelings about the changes in her mother also needed psychological help. The wives, daughters and sisters recounted that they had adjusted their styles of communicating with the person with AD with the goal of mitigating the person’s memory loss. One wife said that “I have become quieter, and I don’t tell my husband as much as I used to…so there is a risk that our communication has become poorer”. A sister said “We will never say to her, “You just said that….”. The communication in one marriage had virtually disappeared and the husband stated “We have no rational conversations anymore”. One sister-in-law described changes in her relationship with her brother-in-law: she only spoke to him about “safe matters” and tried to make it easy for him by posing questions that only required yes or no answers. Two sons stated that they conducted unidirectional conversations with their mothers in which they provided descriptive narrations without waiting for responses. One son used humour as a coping strategy when he spent time with his mother. One husband adapted to the consequences of his wife’s AD by “closing my ears to her rage and accusations”. One wife spoke about the conscientiousness of continuing to engage in joint activities that remained a vital part of their relationship (e.g. hiking in the mountains). One son’s communications with his mother were often focused on trying to limit her anger and false accusations against his sister: “I tell her that if you don’t stop, then you will have to go to a nursing home”. Another son had largely abandoned hope of a relationship with his mother: “Unfortunately, she has become a vegetable. She is here but she can’t account for herself”.

Discussion

This study aimed to explore how the Selves 2 and 3 of close relatives of people with AD were affected by their family member’s AD. Family relationships naturally influence how phenomena are experienced (Hayes, Boylstein, & Zimmerman, 2009; Jansson, Grafström, & Winblad, 1997; Pinquart & Sörensen, 2011). The most important findings of this study were the degrees of complexity and variations in how the relatives recounted their life situations. The effects the AD on the relative’s Selves 2 and 3 were intertwined in various ways, which resulted in a continuous process of self-preservation and maintaining their relationships with the person with AD under changing and new circumstances. The effects on the relatives’ selves varied by gender, type of relationship, or both. The spouses and women spoke of being differently and more strongly affected than did the sons concerning preserving their sense of selves. This finding is in accordance with those of a literature review by Dupuis, Epp and Smale (2004) concerning the roles, experiences, support and coping styles of caregivers. Stoller and Miklowski (2008) found that caregiving spouses, and especially wives, tended to receive less help from others compared with non-spouse caregivers, which resulted in increased stress and may represent a threat to the spouses’ sense of selves. Jansson et al. (1997) found that daughters were significantly more psychologically and physically affected by the caregiver role than sons. In a meta-analysis of 168 studies, Pinquart and Sörensen (2011) found gender differences in caregiver stressors; female and male caregivers have different needs and struggle with different issues.

When describing their Self 2, the participants discussed both positive and negative outcomes of their experience of continuity and change. Pinquart and Sörensen (2003) found that caregiving caused physical, emotional and financial strain. However, several studies have shown that caring for a family member has positive aspects (Boerner, Horowitz, & Schulz, 2004; Cohen, Colantonio, & Vernich, 2002; Sanders, 2005), and that family caregivers derive satisfaction from caring (Marks, Lambert, & Choi, 2002), as expressed by the participants in the present study. Pierce, Lydon and Yang (2012) showed that enthusiastic commitment, unlike moral commitment, was strongly correlated with relationship-satisfaction and that caring was experienced as rewarding. Among the present study, both enthusiastic and moral commitments were expressed. The participants primarily described the Self 2 characteristics that concerned emotional attributes. A recurrent finding was that all the participants described themselves as determined to make the best of the situation based on their life values. To accomplish this, they tried not to worry about the future; rather, they sought to live in the present and take “one day at a time” (cf. Nolan, Grant, & Keady, 1996).

The participants tried to focus on good memories (cf. Nolan et al., 1996) in the hope of supporting the people with AD and contribute to their shared, albeit unpredictable future. The referral to good memories is interpreted as a coping strategy to uphold an enthusiastic commitment and a satisfactory relationship (cf. Pierce et al., 2012). However, the persons with AD strained the participants’ Self 2 s because their situation challenged the caregivers’ prized personal characteristics, such as optimism, positivity, straightforwardness, outspokenness, and loyalty. Knowledge about AD occasionally caused worries about the future and conflicted with the participants’ ability to maintain their optimistic and positive nature. These worries affected the participants’ intentions to focus on the present and challenged their Self 2 attributes. Notably, wives, husbands and daughters explained that they felt obliged to adjust their personal attributes, such as outspokenness and straightforwardness, out of a desire to avoid hurting the feelings of the person with AD due to the memory problems and attenuated coping abilities (cf. Clare, 2002; de Boer et al., 2007).

The participants described conflicting emotions with regard to the desire to support the person with AD and to protect their own desires, needs, and interests. This conflict was especially apparent in the statements from the wives, husbands, and daughters. The sister who worried about being cynical based on her opinion that she was entitled to her own life described a dilemma between being responsible for caregiving and self-realisation. This conflict can be described as being between self-realisation and obligation/guilt (cf. Albinsson & Strang, 2003). The caregiving obligations of the employed wives had possible effects on their perceptions of Selves 2 and 3, which included the perception of attributes associated with interactions with colleagues. Although the quality of the participants’ relationships with their relative with AD varied, their stories were marked by attributes such as loyalty, love and faithfulness. The wife who mentioned occasionally being sick and tired of her husband emphasised that her love had been tested because she found it difficult to accommodate her husband’s increased expectations towards her. Emotional difficulties were part of her experience as a wife, although her marriage was strong and positive (cf. Spruytte, van Audenhove, Lammertyn, & Storms, 2001). Ward-Griffin, Oudshoorn, Clark and Bol (2007) described four types of mother–daughter relationships: custodial, combative, cooperative, and cohesive. The importance of prior relationship quality was obvious in one daughter’s description of her current relationship with her mother as demanding due to a long-standing combative nature (cf. Ward-Griffin et al., 2007). Choi and Marks (2006) reported that negative aspects of relationships exacerbated caregiving stressors.

Self 3 s are created during encounters with others (Harré, 1998). The Self 3 s in this study were affected by both the participant’s relationship with the person with AD (cf. Baumgarten et al., 1992; Boerner et al., 2004; López, Lopez-Arrieta, & Cresp, 2004) and the social network. Caring for a relative with AD might decrease social contact, leading to feelings of social isolation (Brodaty & Donkin, 2009). For the employed wives, all three considered their professional lives as contributing to their wellbeing, even when they occasionally experienced professional–personal conflicts. The latter scenario was also experienced by a daughter, who described the tension between caring for her mother and spending time with her family and friends. AD is associated with requirements that cause stress with regard to maintaining social activities and contacts; for two of the husbands, this meant that their social lives were limited because their wives worried when they left the house. Beeson (2003) found that caregiving spouses of people with AD reported significantly higher levels of loneliness and depression than non-caregiving spouses. Jansson and Grafström (2011) found that spouses often experience loneliness despite being part of a “two-some”.

Several researchers have reported that both the brain damage associated with AD and changes in how they are treated by other people affect people with this disease (Kitwood, 1997; Langdon, Eagle, & Warner, 2007). Our major findings regarding changes in relationships were related to communication. Some people with AD develop communication problems (Ekman, Norberg, Viitanen, & Winblad, 1991), and this affected some of the relatives in our study, who characterised their relationships as having limited and diminished communication (cf. Gillies, 2011) due to the caregivers’ reluctance to initiate conversations. Often, the communication had deteriorated and involved conveying facts rather than engaging in a dialogue to avoid hurting the person with AD. These relatives were afraid that more interactive conversations might be too demanding and revealing for the person with AD.

One wife described a phenomenon of shifting identities (cf. Molyneaux, Butchard, Simpson, & Muray, 2011) in her marriage caused by her assumption of tasks previously performed by her husband. Gillies (2011) described an identity shift as actions that compensate for the relative’s cognitive impairment. Furthermore, Molyneaux et al. (2011) showed how couplehood is co-constructed through strategies to maintain their relationship and reframe current experiences in light of the past when one partner develops dementia. Robinson, Clare and Evans (2005) developed two themes from qualitative data. One theme was called “Everything is changed, we have to go from there”. In many ways, this statement reflects how the participants managed to incorporate and relate the effects of their relative’s AD on their selves. The participants emphasised that they found meaning and positive life experiences in their relationship and interactions with the person with AD, despite the effects on their Selves 2 and 3. This finding is in agreement with those of Sanders (2005), who reported feelings of togetherness, shared activities, reciprocal bonds, and accomplishments, We interpret this finding in light of literature on the effects of reciprocal relationships (Graham & Bassett, 2006), enthusiasm and moral commitment (Pierce et al. 2012). Goldsteen et al. (2007) discussed the changes in relationships and responsibilities attached to the role of mother and daughter being switched around.

According to our findings, Selves 2 and 3 were affected in close relatives of people with AD. There was variation in how and to what degree the selves were affected. However, we noted a tension between self-maintenance and adapting to AD-related changes in the relative’s statements. Selves 2 and 3 had changed less for sons in this study than for the other participants. This finding may be interpreted as the result of sons’ custodial relationship being based on a sense of duty (cf. Ward-Griffin et al., 2007). Previous research has shown that sons provide less care to elderly parents than do daughters (Coward & Dwyer, 1990; Lee, Dwyer, & Coward, 1993).

Limitations

This study includes the interviews with two close relatives of each of 10 people with AD. Single interviews are obviously limited compared with repeated interviews over a longer time span, the latter of which can produce more data and detailed accounts (e.g. Sabat & Harré, 1992). In summary, this study contributes to the understanding of how close relatives of people with AD experience their Selves 2 and 3. There are limitations concerning effects in relation to gender and the nature of relationships on Selves 2 and 3 because the interviewees represent a heterogeneous group. However, our findings may be of benefit to people planning the future care of a person with AD, including the provision of support for their relatives. Further data will be presented based on the second interviews of the participants, which were interviewed six months after the first interviews.

Conclusion

Our study revealed that close relatives of people with AD reported that their senses of Selves 2 and 3 were affected. These relatives underwent a continuous process of adaptation and found ways to preserve and use their attributes with the best of intentions, despite experiencing conflicting emotions. Although the participants found their new circumstances demanding as their relationships with the person with AD changed, overall, they reported positive emotions because they wanted to make the best of the situation due to attributes such as love, faithfulness, loyalty and duty as well as to honour positive memories from the past. Strikingly, the participants employed sober attitudes to help them focus on living in the present rather than worrying about an insecure future. The findings indicate that the participants felt that their sense of self was affected by the AD in their loved one and that they tried to preserve their sense of self while they tried to integrate changes due to the AD with their new sense of self.

Footnotes

Author contributions

Study design: KA, AN, KN; data collection: AMF, MWS, KN; data analysis: MWS, KN, AN; manuscript preparation: MWS, KN, AN, KA.

Acknowledgements

The authors gratefully thank the participants who have contributed to the study by sharing their experiences.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The project was financed by the Research Council of Norway.

Author Biographies

Mari Wolff Skaalvik is RN, RNT, PhD and Assistant Professor at the Department of Health and Care Sciences, Tromsø University, the Arctic University. She is mainly doing research on dementia care and nursing education.

Astrid Norberg is RN and PhD, Professor Emerita at the Department of Nursing, Umeå University, Umeå and Senior Professor at the Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden. She is mainly doing research on sense of self in people with Alzheimer’s disease (AD) and their family members and on Stress of Conscience among personnel that care for people with AD.

Ketil Normann is RN and PhD, Professor at the Department of Health and Care Sciences, Tromsø University, the Arctic University. He is mainly doing research about persons with Alzheimer’s disease and their close relatives.

Aud-Mari Fjelltun is RN and PhD and works at the University Hospital in Northern Norway. Her research is mainly about nursing care for the elderly and mental health care.

Kenneth Asplund is RN and PhD, Professor at the Department of Nursing, Umeå University, Umeå. His research is mainly on dementia and psychiatric nursing from a family perspective.

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